2011-2014. The original blog that got it all started. It represents reflections I had and sharing I did, during a time period in my life, freshly post autism diagnosis, worsening illness, though I wasn't yet clear on things. I was trying to process and going through a lot of hard learning. There's some good stuff in here, which helped others, and there's also some stuff that no longer reflects my situation and/or evolved insights. Please read with this in mind.

Thursday, September 25, 2014

Entry 20: Falling through the cracks...when will it stop? Because I'm ready to recover!

Oct.
9. 2012

I'm not feeling very good...another flare up, and these happen
about half the time. It's my private hell. Interfering with my life, I feel,
and letting others and myself down. I know that's extreme but I get frustrated.
*Sigh* I'm not digesting my dinner properly; it's just kind of sitting there in
my stomach. I can't get a full breath in, feel flushed/flu-is...joints feel
twisted; aching all over. Dizzy, exhausted...

I actually wake up like this most mornings, as I believe my
brain has a sleep disorder and I cannot get enough quality sleep, due to maybe
carrying too much information and built in survival mechanism? Usually it
does dissipate after a few hours, but some days, it stays with me for the day.
Also, my whole mouth, head and neck constantly ache and hold tension, from
grinding my teeth in the night, for so long.

I was supposed to have orthodontic treatment and preventative
stuff as a teen. But finances did not allow for this to happen. Now, the damage
is a bit far-gone... so I just live with it and try not to think about it.

My husband tells me that I often talk and script in my sleep;
and sometimes sound frightened or scared. I know I have PTSD, especially from
my adolescence. The details I’m not into elaborating on. A lot of it was to do
with going undiagnosed, and as a result being repeatedly badly misunderstood and
neglected. I have buried most of it in order to function.

I also sometimes see flashing pictures before me as I am trying
to sleep, and my legs, arms and sometimes head twitches and jerks…like
myoclonus? I have asked for a referral for sleep study; but was denied. I am
too scared to ask for a referral to a Neurologist.... because I don't want to
experience the intense frustration of being denied one.

Actually, I feel like I don't even want to go into the doctors'
office anymore without a worker and/or advocate. Those guys keep saying that
we're going to set something up in the way of a plan for me…but *taps fingers*
I am still waiting. I feel that the length of time in which they are keeping me
waiting is just not Ok. I am a good person, a mother, and an ambitious person
with a lot to offer...and I can't wait till the day where I don't feel like I'm
constantly falling through the cracks...

Man. sometimes I feel like this whatever-this-is chronic illness
is slowly eating away at me. I don't want to let anybody down, especially my
boys. I push myself…and being also autistic, in my position, I need all the
help I can get including being able to manage my time and not go on just
"adrenalin" all the time.

Oh but wait…I just love running around in circles like an
over-caffeinated chicken with it's head cut off, trying to keep my house clean
and in order for the sake of my family and for my own sanity too *Sarcasm*

I push myself, while dealing with dyspraxia too. Dyspraxia is a
perceptual reasoning disorder that makes fine motor movement co-ordination
challenging; taking extra effort and twice as long to clean up and organize the
physical environment; compared to a typical person. Dyspraxics are often
accused of being slobs and scatterbrains when it is not really our fault. Then this
coupled with not feeling well in so many ways; chronic muscle tension,
weakness/fatigue and joint injury…it just sucks.

It's not like I don't make an effort, and the result is often
satisfactory considering. However, it feels like swimming in a deep ocean with
the island of destination barely within reach.

Once I get to the shore I, more often than not, just pass out on
the beach; without any time left to admire the beauty of it: to collect the
lovely rocks and shells.

My husband does help, but he's AS too, works part time, and not
superhuman either. You won't believe the kind of revolving-door messes two
little munchkins, one with autism, can make. As much as I love them deeply,
their behaviors can be a challenge. It can push on my sensory issues at times,
though I do my best to “shove it back.”

I know I can sound smart, and look “together” in the videos,
which I just started doing, now that I know how to use the editing program. What
people may not realize is that I can edit the videos really well; I edit out pauses,
ums, and little ticks, as well as if I repeat myself or begin to ramble.)
However, I do genuinely suffer from deficits too, believe me…if you only saw me
in real life, especially on some days! I’m just a perfectionist and when I
present, I’ll do my best to present well. After many years of having to, I’ve
become really good at it.

I don’t like to show vulnerability that much. What’s really
funny is they if I complain even an inlking people might say it’s complaining…
and it’s ridiculous in lieu of the fact I’m not disclosing 75% of just how hard
it really is overall…my life, right now. If I don’t have the energy to present,
and present well: I’ll hide away until I do…

Sure, I do have good days, but they aren't often enough. I wish
there were more. I long to be out of this pain and fatigue. There’s so much I
want to do and I don’t want it to get in the way.

The worse my FM is…the worse my dyspraxia is too, of course. It
really overlaps in a hellish way. There are so many things that I want to do,
that I feel inhibited from, more so from the FM than from the autism even.

I understand the autism now; I am ready to walk a path of clear
desire...but there's this. How long it took for me to get disability approval
and community living services, and the professional guidance that I badly need
in order to have a better arrangement for managing with autism and a chronic illness,
was too much. I think I’m missing some things here, and I need better tools to
manage. Where, and how, though?

And, I’m not the only one…but I'm strong enough to hang on. Many
in my position lose grip. I know there are people on the autism spectrum that
are already receiving extensive services and having a hard time with how they
are carried out, and while I do understand where they are coming from to a
certain extent, I'm coming from another angle on things at the moment. Maybe
there’s more to be learned here. Probably, we’ll see …

One thing I am grateful for is that the program I applied for
has a good understanding and seeming respect of my independence, and knows that
an authoritative approach would only push me away. I do appreciate their
understanding on that as I feel it's genuine. I think the particular service
provider agency that I chose, is right for me in my circumstance, as they are
also experienced in dealing with clients whom have various brain injuries (FM
has a strong cognitive component.) Again, we’ll see.

The only problem I have with all of this is how slow the process
had been, I’ve long been “hanging in the balance” for the service to be
actually implemented. I’m now in total burnout, especially physically. I am not
blaming the agency itself as much as I am blaming the people at the top.

Another serious example of this is how long the process is taking
to diagnose kids on the autism spectrum, and get them the help they need in
order to thrive in school. This is especially when it comes to kids on the
higher functioning end, with Asperger’s'. I have a friend whose going through
agony with her daughter, whom is actually running out of her kindergarten
classroom due to being overloaded as well as injuring herself.

She is a very pretty and smart little girl, who’s very advanced
in her speech and seems quite socially motivated. So, clinicians keep insisting
she is not autistic although she has many other signs and symptoms of clearly
autism related difficulties. You would also think that since her mother has an Asperger’s'
diagnosis, that they would make a connection.

We badly need a paradigm shift in the diagnostic criteria for
autism spectrum and it is not happening fast enough (due to fear of cost, among
other things.) The basic result is that parents are being dragged along in
agony, having to fight to prove their cases, for not months; but years. Many
people in many different situations, for example having a need for medical
health services or disability approval, are in the name position.

I believe going undiagnosed for so long in a hard knock
existence, and services taking so long to reach me, have caused my nervous
system to become diseased and in turn make me chronically sick/in pain. I
genuinely believe that...if you only knew what I went through and what I go
through; you would say it's a given.

However, I also believe such a state can be reversed. The less
complications that are “thrown at me” the better the chances, mind you.

I'm only 27. I am learning a lot about this condition and there
is hope...but, there are some barriers I need to past, in order to really
formulate a recuperation plan. There is also a really “rising above” kind of
attitude that I need to fully hone. I’m not there yet. It’s easier said than
done, and I bet only a fair few are able to do this whilst these kinds of
challenges. However, I want to, and need
to be, one of these fair few.

I actually believe that being able to regularly do my music
would be so beneficial to me, especially with regards to the former. Although I
love writing like this and do it because I feel compelled.

Thinking in patterns/pictures first, as Dr. Temple Grandin
described, is something that’s very true for me. So, in lieu of this, it's not
a stress-free activity, to translate and articulate like this. In retrospect, I
do enjoy it, it's not that I don't...but it does take a lot of energy some of
which is adrenal. Not so much with poetry though, that is quite different. The
poetry, and most especially the music and arts, are on a different kind of
(purely blissful!) energy wavelength, which I feel I’ll need to switch to, once
I feel complete in the way of this blogging/actualizing “crusade” here. This is
a temporary phase that I’m in.

I know I can maybe sound somewhat intellectual (more like an absent
minded professor or who knows) but I'm creative, an artist first; music is my
number one passion. It really is the one thing that relaxes me and brings me
true joy. I miss it. I have an entire pop music artist persona/alter ego that I
love getting into. I believe (and have been told by those whom I have revealed
it to) that I can genuinely rock it with the music, and am in my true element
there. It is just so therapeutic. When I'm into it, I completely forget about
the stupid fibro.

Recently, I had an immune crash and very bad bout of bronchitis,
which put my singing on pause. I’m almost recovered from it now and ready to
get back to my little mini korg so I can practice again, at least sometimes. I
was and am working on trying to complete an EP album but...finances always stop
me.

I actually have someone who will help me for a very reasonable
deal, and we've got some great although incomplete stuff sitting there…but you
can't give something when you have nothing. I also have made music at home, and
need to put that regularly into my schedule. I have some learning/processing
challenges with new things but I have made a couple great tunes by myself so I
have proven than once I get it, I get it and take off. How autistic of me.

Oh music...I miss you so much and I will see you soon. In the
mean time, I silently and secretly mourn. I want to do what I always dreamed
of.

Now I really know how to get it, minus the day to day adaptive
functioning challenges that I am now much more conscious of. Understanding what
they are, though, is not the same as completely knowing how to help myself when
I have processing issues, social communication difficulties and short-term
memory troubles.

You don't see it in writing but in person, I need the energy to
rapidly think before I talk. The videos, once again, aren’t a good indicator
whilst edited. Of course, I also record the videos when prompted by an idea,
and not when I’m in a crash, but when I have at least decent energy.

If I lack energy, I may forget important things I need to say, by
thought cycling, spacing out and getting distractible, or zeroing in on one
topic. Sometimes, when I don’t feel well especially, I really can't broaden my
scope well. This is particularly so in verbal language. I hold myself to a high
standard in terms of how I present to people, so I mask a lot of my
difficulties for this reason.

I wish this FM would go away... because I'm finally getting the
opportunities I never had before…and the connections, the real understanding of
who I am...and finally, some self-esteem. I don't want this fibromyalgia beast
or whatever it is, to take it away from me. I speak out of fear although in my
heart; I still have faith that it ultimately won't.

I can't wait for the new specialized clinic to open in 2013 and
I can't wait to start seeing a naturopath (who understands autism/Asperger’s)
as well to give me some proper guidance on diet and supplements. I'm doing it
all by myself right now and as much as I have that aspie brain, it is really is
exhausting.

I am ready to just give it up to someone I trust, if I could
find this person without it costing beyond my ability to pay. Fat chance on
that, though. I’ll find someone, and see them a couple times at least.
Just make me a simple plan…I can't do this anymore. Too draining really.

What the meaning is in being sick like this, I’m not sure of…
and I just want an answer. But, that’s not going to happen right now. Live in
the moment...I'll try. Well good night. I suddenly realize I don’t want to type
anymore, let alone think of any words. I feel like crying so I'm just going to
lie down, cry, and pray.